Well got the call on our boy yesterday. By the way his name is Christian, and he's 16. Test came back positive for Hodgkins as we kinda figured it would. He actually took it quite well, "I got cancer? I see!" You could see the wheels turning on this very bright 16yo. We admit him today to get the process started. She said they will do the heart and lung tests. Try to get the PET scan done if there's an opening. Then install his port and do the bone marrow biopsy once more to ensure it hasn't migrated there. Then start chemotherapy. All before Monday. Do things usually move this quickly? Maybe because he's a child who's been so gravely sick for so long? Maybe because they feel he's beyond the initial stages? Just seems very quick and is treatment usually started before PET? Docs concern was that PET usually takes awhile. Oh so many questions. And I'm sure she answered some of them yesterday but the fog was so thick. One huge question I have: living in Alaska they don't see a lot of this, although we have an "up and coming" cancer center. Doc says they are supported by some cancer outfit in Oregon. Should we, could we, take him out of state? Or trust that the treatment will be the same meaning success is the same? How about the port being installed today/tomorrow? If we change our minds after they install this can we still fly him elsewhere? Oh so many questions! HELP! By the way my name is Christine. I do have a face but certainly no time to post it now....
Hi Christine, I think that things are moving this quickly because of your son's age. As a 16 year-old, your son's probably being given priority over older patients. I'm 21 and I can certainly see how being young helps speed things up. It may be unfair, but oncology centers don't see as many patients in this age group, so they treat us with special care. Or at least that's the impression I've been getting.
PET shows whether the lymphoma has spread to the stomach or other places, thus determining the number of chemo cycles. The initial phase will be the same no matter what stage your son is at, so I guess it's ok to start chemo without PET.
Port installation is a very minor procedure that wouldn't prevent your son from flying. I had chemo on the same day I received the port... It's just 7 or 8 stitches, not bad at all.
Best of luck to Christian!
Thanks Hannah for the info and support! And thanks to everyone else here for all the support! It's just nice to know there's a place to go vent and just relieve yourself. It was an extremely long day yesterday. Started with doc saying he had stage 3B but that would be verified after the upcoming bone marrow to verify it hasn't spread. Boy so much info and questions where does one even start? Almost feels like I have a case of OCR cause my head is just spinning circles! He got a blood transfusion last night and it certainly gave him a much needed boost! Doc said to expect more along the way. We opted to postpone treatment until next week so we could perform a sperm banking. What a hassle this is from up here! Was told he'd get some 6 months of chemo cocktails then follow that with radiation. Sound like the proper protocol? Oh and no port; they will instead install this catheter thing with 2 tubes. Oh so much to digest! I am just trying so hard to keep my faith in the God I have questioned so much lately! Chin up and dry eyes for him! He needs our strength! :-)
Hello Christine,
Sounds like you have a very positive attitude at the moment. Try to hang on to that because that will be very important in the months ahead. You sons protocol sounds about right in comparison to mine. Doc told me that I am 4A a few days ago and she is talking about 8 months of chemo.
I know the it is hard to keep your faith at times like these, but they are also the time when you need your faith the most. Plus, I'm pretty sure God can handle your questions, doubt, and anger. You may question your faith in Him, but he never questions His faith in you.
Your son is lucky to have you on his team. I wish you all the best and will include you and Christian in my prayers. Please keep us informed on how he is coming along.
I was diagnosed 3B and I had 6months of chemo only and I was in remission after about 2months of chemo which is named ABVD my doc said no radiation. Why not the port it's so much easier and safer with this kind of chemo thats what I was told. And his symptoms should go away after the first couple of chemo cycles.
Ryan you are awesome! I hope you maintain the great smile you have in your picture! And to be honest I try my best to stay positive, but find many times throughout the day I am an absolute wreck. For pete's sake I broke down crying at Walmart today in the mens underwear department with a complete stranger. Goodness!
Ms. P - the doc wants this catheter because it has two tubes. They say there are drugs that will be administered simultaneously but they can not mix prior to entering the blood stream. The two tubes go in at different lengths. This allows one medicine to enter at one point and the other at another. It sounds like this way is a huge maintenance headache though, but what they need for what is being administered. I'm sorry I can't recall specific names. I did though buy me a voice recorder today so I can tape all conversations and replay them when I am in a clear state of mind.
Christine,
I know what you mean about having ups and downs during the day. Last week my wife backed into a fire hydrant as we were leaving the store and she just fell apart. I feel like HL has taken more of an emotional toll on my wife and parents than it has on me at this point. I have my ups and down as well, but every bit of bad news we have received over the past few weeks just seems to hit everybody else just a bit harder. Part of that may be because I am a chronic optimist and I don't worry about stuff I can't control as much. Keep your head up and keep posting. We are all in this together in one way or another.
Hi Christine, Ryan,
First, Ryan you have a soft spot in my heart as my oldest son is also Ryan M. My younger son was diagnosed with Hodgins 4b on his 16th birthday this year. He has completed six cycles of chemo and will begin six weeks of radiation next week. I would recommend that anyone with a child check out the curesearch website to see what clinical trials are available. These trials utilize the standard treatment and enhance upon it.
Christine, hang in there. We are five months into the process and while I try to remain calm, I have alternate days of normalcy and then not quote so normal. Without a doubt it is hard to maintain an even emotional level.
We just had a PET scan and an echocardiogram today and my emotional balance is a little precarious.
My sincere best wishes to you all.
I love you both.
Hi... I have only read ur original post but I felt the same way. Must be twice as scary being the mom watching ur youngin go through this. As for me, within two weeks, I had a node removed, given a diagnosis, had an MRI and a pet scan, installed a port and started chemo. Did I mention I work full time and I'm a single mom--his father is deceased...
No time to ask questions. I figure the reason for speed is it is a fast spreading life threatening illness. No time to ask questions.
I hope this helps in some way.